Roadmap Information & Support Resources
Use the information and support resources provided to help with taking the next steps beyond receiving a rare diagnosis or continuing life without a diagnosis.
Rare diagnosis
After the journey to find an answer, receiving a rare diagnosis can be a time of mixed feelings and questions. Although information specific to the diagnosis is often limited, general resources can help with aspects of daily life as well as next steps [...]
View the roadmapNo diagnosis
Many children and adults remain without a diagnosis despite multiple assessments and investigations. General resources can help with many aspects of daily life as well as taking steps forward, even without an identified cause for signs/symptoms [...]
View the roadmapCriteria for resource selection
The credibility and relevance of each resource is verified based on the following criteria:
- multiple author + clearly identified parent organization (e.g. who we are/our team)
- appropriate advisory board/committee
- current resource with identifiable review date
- easy read, appropriate language
- broadly applicable to stakeholders from diverse backgrounds